Sister not diagnosed yet but cognitive and physical challenges

She is almost done with EEG test. Recorded napping now. Things got really exciting when we parked because she starting having symptoms of a heart attack. She got emergency care but thankfully it turned out to be a healthy heart in the body of a terrified woman. Every one is so kind here. And knowing I can bounce into this discussion and gets hugs and info gives me such calm strength.

Thank you for the hug! She started having left shoulder pain and numbness as we were parking for her test. Had to get help .... They called all the doctors in hearing and gave paramedic care. Met a lot of nice people. She had her tests! I read EEG results on portal but have no idea what the EEG results mean. I'll have to be patient. Thank you all again

Good morning my friends!
Does anyone know of a style of slipper/shoe that will protect my sister's feet ? She walks with a shuffle sometimes, especially at night, and currently wears either slip on slippers, which cause her to squeeze up her toes to hold them on and shuffle more, or socks with little nubbies on the bottom for traction. But we don't know if that is going to catch on the floor and cause her to fall.

Hello everyone!
I don't even know where to start.
Just saw family doctor as first doctor consult since scans. We see neurology on January 22. They're still thinking dementia with Lewy Bodies.
Doc talked about Mayo Palliative Care program but, although she qualifies in 3 areas, she needs to sign a DNR order in case of collapse with no breathing/pulse. But she wants them to do everything to save her and not leave her dying on the floor... Doc very empathetic but said reality is if they resuscitate her with her existing disease, her quality of life will likely be very low. He gave us a packet to fill out. Her son is next of kin and coming out Jan 5-11 to do legal things, POA, etc.
Doc also stopped her Donzole because it was causing extreme weakness and confusion. Or maybe she is just getting worse really quickly.
The third area is my family knows me, and that I love caring for my sister, but I am already utterly exhausted. She gets such comfort from me and calls me every few minutes, and gets angry if I don't drop everything and run to her. I softly tell her she has speak kindly to me. She says sorry. This is so not like her. So sad.
What should we do when her son is here?

P.S. she also says the aliens are coming for us ... That we should all run and hide . . That she should not feel this way ... But every sentence is said with her eyes closed, in super slow motion, and she wants me to keep listening because she's almost got it... Do I tell her there's no aliens (she was an avid sci Fi reader)? Or is that arguing with her (which of course I don't want to do?)
Should I sit by her side and listen for hours as she talks and dozes? When I try to leave she says wait and keeps slowly talking, one word every few minutes.

Linda, My heart goes out to you. It sounds like your sister's condition is progressing rapidly. It is great that her son is coming soon. Has he seen her recently, or is he going to be shocked when he comes?
Is he the type that will step in and help with the legal matters? If so, can he, or you, or another family member locate an eldercare attorney near you and set up an appointment early in his visit?
It sounds to me, from your descriptions of events this month, that it may be time for Legal and Durable Medical Power of Attorneys, or even a guardianship. Encourage him to take an active role in this if he can - please do not add the burden of making critical decisions and dealing with finances to your already overflowing plate!
At the end of my Mom's life, even though she was still fairly competent, my brother held her Financial/Legal Power of Attorney and sister and I jointly held her Medical Power of Attorney, so we could make decisions together about her care (there are 6 kids, the rest were okay with the arrangement.)
Definitely invite him to all medical appointments so he can hear first hand what her doctors advise.
Please come back and chat here - we will hold your hand remotely as you travel through this difficult time.
Sue

Linda
Delusions and hallucinations are common with Lewy Body. It is futile and not helpful to try to convince them they are not real. To them they are very real. Someone suggested to me to simply and calmly assure your LO that you love them and will protect and care for them from anything that comes along. This has worked for us most of the time. There are some meds that can take the edge off the delusions and/or hallucinations if they are really bothersome. You can check with neurologist. My DW also wants me to sit right beside her all day. I have found telling her to "hold that thought a minute" I have to go do something (could be anything) and I'll be right back. By the time I get back she has forgotten about it. I know this is all happening fast for you, but you have good instincts on caring for your sister. Breath, you are doing great and she is lucky to have you there.

My suggestion about slippers for your sister: she might be better off wearing slippers with a hard sole but not slip-ons, the ones you have to put your entire foot in.

Thank you, Sue, for your helpful compassion. Her son is going to be in charge of all her financial and legal issues.... I am going to be in charge of her day to day care and getting her to all her appointments (with the help of my sons, daughters, and husband). My nephew is very interested in conferencing in on all her appointments that are consultations, and has been doing so since his mom got sick. He calls her and comforts her in so many ways. He saw her at Thanksgiving, and even though I kept him up to date with her health issues with daily, detailed text messages, he was shocked to see her weakness and decline at Christmas.
He will have legal power of attorney, and medical power of attorney. I hope he will let me be joint on the medical POA because I may have to make decisions quickly ... do you agree?
She has stopped the medicine that was ?causing side effects of extreme weakness and confusion. She has improved a lot in that way, almost pre-medicine in most areas. But she is having hallucinations ... for example, she said she was scared of how my legs look.... she saw legs that had no skin and could see all my bones and muscles. It is so very hard to see her fall apart like this. But she retains her sense of humor.... she is truly a delightful woman in so many ways.
Tomorrow we start physical therapy twice a week. I hope that goes well.
Thank you again for being here. My whole family is super worried about me and really encourage me to have your support through this. (I had cancer a decade ago, and they are quite protective over me.)

Linda - It is a rare family that makes such a comprehensive plan. Kudos to you, your nephew, husband and kids!
I personally like the idea of aa joint medical POA because decisions often need to be made on the fly. I remember making decisions about my Grandma when my parents were away and left my sister and me - ages 25 & 30 - in charge. Neither of us would have wanted to do it alone!

Funny somehow, but even though I spent my career in technology. I was thinking last week how long I have been involved in care-giving - I remember helping my Dad with my Great-Uncles and Aunts as early as the age of 9, continued with grandparents, neighbors, parents, in-laws, and now at 72 I still talk to people about it...I know my kids will be there for us - they are already involved with their own friends and neighbors.

Tell your family, over and over, how much you appreciate their help and support - it is a rare quality.
And yes, we will always try to be there for you - as their backup.
Sue